Disarticulation

Hope and I went to the Shriner’s hospital in Shreveport, Louisiana in February 2008. Deedee drove from her home in Texas and met us there. The day was long, full of x rays and exams. The doctor explained amputation would be required and said he would try to repair her hip while she was under for the amputation. The nurse said the earliest they could schedule surgery would be during the summer. She left the room to go check the schedule. Deedee and I discussed how doing it in the summer would allow us time to plan and prepare. The nurse walked back into the room carrying a cabbage patch doll. She said “I’ve got her down for April 10th” Deedee and I looked at each other shocked. The nurse showed us the doll she carried in. The doll had both legs wrapped in a hard cast from the hip to the ankle. A wooden bar was attached near the middle of the calves to keep the legs from moving. I thought of how long it took Hope to learn how to crawl.  How much she enjoyed crawling.  The nurse explained if the doctor was successful with repairing the hip, Hope would be in a cast like the dolls for 6 to 12 weeks.  I was a wreck.  I didn’t want Hope not able to use her legs.  How was I supposed to bathe her?  What can she wear?  The thoughts and had are things I sometimes still think today.  I wondered what if she someday resents me for having choosing to have her leg amputated?  What if she would have preferred to make a choice for herself when she was older?  I told myself she didn’t want to be wheelchair bound.  She would want to learn to walk and run like other children her age.  My heart was breaking.  I really agreed to have a part of my baby’s body removed.  I felt crushed but, I knew I was making the right choice for her.

Hope and I went home to El Reno.  Things were pretty good.  My friend and I worked at a nursing home together.  Her grandmother baby set our girls.  On our days off we would do fun activities with our girls in her boyfriend’s two sons.  One afternoon her boyfriend came into the living room smoking a pipe.  I told my friend that I didn’t want marijuana around Hope.  A few days later her boyfriend said I had been acting differently.  Something wasn’t right.  I told him I was upset.  He got angry.  He said he would just move out.  I didn’t want to be the cause of my friend’s relationship failing.  I gathered Hope and I’s belongings.  We went to my grandparents to stay.  I found a house to rent April 1 in Shawnee.  I moved a few things in.  I decided to wait until after Hope’s surgery to move in completely.

Hope and I went to state Deedee’s house in Texas 3 to 4 days before her surgery.  Two days before surgery we printed her feet.  My 15 year old cousin made himself a T shirt with Hope’s footprints on it.  He left the room briefly.  He returned holding the shirt for us to see.  He had written in sharpie “Habi’s feet together one last time”.  Deedee and I cried.  Hope really wouldn’t have 2 feet ever again in just a couple of days.  Early in the morning April 9 Deedee Hope and I loaded up and headed port Shreveport.  We arrived at the hospital at noon.  Hope was admitted in preparation for her surgery.  She shared a room with a five or six year old little girl.  Every time Hope saw the little girl she would smile.  The little girl spent a lot of time in Hope’s area of the room.  Deedee and I spent a lot of time chatting with the girl’s mom.  Hope was allowed nothing to eat or drink after midnight.  Deedee slept in the patient breakroom; I slept at Hope’s bedside.  The next morning Hope was fussy.  She couldn’t eat or drink anything.  Deedee and I were anxious and emotional.  We cried a lot that morning.  We took turns holding Hope. A nurse brought Hope a portable DVD player, DVD’s, and medication to relax her.  Within 10 minutes the medicine kicked in.  Hope began behaving like she was drunk.  She wasn’t crying anymore.  She was falling all over the crib.  She acted like her head weighed 50 pounds.  Every direction she turned, her head slowly fell over.  She kept reaching to the screen of the DVD player.  She would pinch two fingers together every time she touched the screen.  She was trying to pick up the characters out of the show she was watching.  Deedee and I laughed so hard we cried.  Hope’s funny behavior really broke the tension for us.  Finally the doctor came in.  He reminded us exactly what was going to be done.  Then he told us the surgery would take an hour and ½ or less.  The nurse wheeled her out of the room.  Another nurse showed us where we could wait.  Deedee and I sat there waiting.  The Dr. walked into the room about 45 minutes later.  He told us the surgery went well.  He explained that he was unable to make any repairs to her hip.  He said between the ages of four and five she would need a complete hip replacement.  I was somewhat relieved she wouldn’t be in the cast we were shown two months earlier.  This meant she would be in the same cast when she was older.  That made me sad.

Deedee and I went back to Hope’s room to wait for her.  The nurses brought Hope in.  She was sleeping and had an oxygen mask on her face.  She started to wake.  She began grabbing and pulling at the mask.  We took it off.  She crawled around the bed and was happy.  Deedee and I noticed on the monitor the Hope’s O2 stats had dropped 1 to 2 points.  Deedee grabbed oxygen mask and put it on Hope.  Hope started screaming and crying.  She was jerking her head back and forth.  She was trying to grab the mask off of her face.  Deedee’s held the mask on her face tightly.  Hope oxygen levels dropped into the seventies.  I ran down to the nurse’s station.  I told the nurse what was happening.  She told me to put the oxygen mask on Hope.  I was irritated.  I asked what she thought we were doing.  Then I said “please come help!”  I ran back to Hope’s room.  The nurse walked in right behind me.  She immediately turned the gauges up on the wall for the oxygen.  The nurse had Hope’s stats back in the nineties in no time at all.  As she watched the monitor, she slowly turned the oxygen down.  Once the mask was removed, Hope was crawling again.  The nurse told Deedee and I we really needed to try and keep her off her stump.  She continued crawling in crawling despite our efforts to hold her or make are lay down.  The next morning the Dr. came in.  We asked him how he expected us to keep her off of her stump.  He said “if it hurts too bad, she’ll” stop.  She never stopped.  We were discharged from the hospital on April 11.  Hope and I stayed it Deedee’s for week.  Hope crawled the whole time just as fast as she always had.  Hope and I headed home.  The same family member I caught stealing my mother’s medication that day she died asked me if they could have the liquid Lortab that had been prescribed to Hope, which was so hurtful to me. I moved all of our things into the house I rented before I left.  Times were very hard.  I wasn’t working.  There were many times Hope and I had noodles to eat.  I was grateful we had something to eat.  Charles got out of jail at the end of April.  He went to work trimming trees for minimum wage.  I was insecure, I couldn’t trust him.  I stayed with him because he was good to Hope.  I was willing to do whatever would be best for her.  Even if that meant I was unhappy.  I pulled photo albums out often.  I would show hope photos often.  I pointed to the man in the pictures and would say “this is Mitchell”.  I knew someday she would want to know about him.  In early June, I started the process of getting Hope physical therapy in our home.  I met with my attorney to start the divorce.  Hope had an appointment to be casted for her first prosthetic leg.  When we came home, I met Hope’s physical therapist for the first time.  She told me when Hope got her prosthetic leg; she would start working with her 1 to 2 times a week.  I met with my attorney that week.  She told me she would get my divorce papers drawn up and we could file them after Hope’s appointments were taken care of.  Hope and I rode to the Shriner’s van to Shreveport.  Deedee’s met us there.  We stay the night in a hotel, and then we went to the hospital in the morning.  That prosthetist brought her tiny leg into the room and put it on her.  Deedee and I bawled.  I cannot adequately describe exactly what it felt like seeing my child stand on two legs for the first time in her life.  She was three days shy of 20 months.  Hope hated the leg.  We stayed at the hospital for nearly a week.  Every day was packed with hours of physical therapy.  Hope cried more often then she smiled.  My aunt, Hope and I were walking down a hallway.  We walked past a couple with the baby in the stroller.  Both of his legs looked like Hope’s leg before surgery.  My aunt asked them if it was Tibial hemimelia they said it was and they were they are preparing for his double amputation.  We introduced ourselves and we told them Hope just had her surgery 10 weeks ago.  They introduce themselves Diane, in her husband Jason, and their nine month old son Talon.  I felt instantly connected with their family.  Finally parents who knew exactly how I felt.  We spent some time in their patient room.  Deedee and I talked a lot with Diane and Jason.  Talon and Hope smiled and laughed as they played.  My grandfather called me and told me he had divorce papers to serve me when I got home.  I felt relieved.  Hope and I went home the next day.  My papa gave me the divorce papers.  As I looked through the divorce papers there was an attached notarized letter.  This letter crushed me.  Mitchell stated he wanted child support waived, parental rights terminated, and no visitation.  He didn’t want to be notified of any adoption proceedings concerning her.  I wondered how I would be able to tell her he didn’t want her when she was older.  I worried about the deep rejection she would feel.  I told myself that maybe Mitchell didn’t really mean it.  I took the divorce papers to my attorney.  She looked through the papers.  When she reached the letter, she looked at me with tears in her eyes. “How could someone quit on their child like this?”  She asked.  I told her I can’t answer that question.  I could not fathom spending my life without Hope.  I called Mitchell to tell him he forgot to include the vehicle we owned jointly in the papers.  He cussed me out.  He told me he had already spent more than he wanted on our divorce.  He chose not to correct it.

Hope started physical therapy at home.  She hated wearing her prosthetic.  She hated trying to walk.  Her physical therapist and I used care bear DVD’s to bribe her.

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